Submission Equity Health innovation System reform and governance Consumer Data, Data linkage

Draft Data Availability and Transparency Code

Research Australia 13 September 2022 2022 · Submission

In brief

Research Australia recommended the National Data Commissioner to make the new data sharing code clearer for researchers. It warned that vague definitions of ‘output’ could let data custodians restrict publication of research findings, and asked that publicly funded or ethics-approved research be treated as serving the public interest.

Abstract

This letter submission to the National Data Commissioner responds to the Draft Data Availability and Transparency Code, which will guide how data custodians and accredited users apply the data sharing principles under the Data Availability and Transparency Act. Using a hypothetical case study of research estimating prescription opioid addiction from Pharmaceutical Benefits Scheme (PBS) data, Research Australia maintains that the Act’s broad definitions of ‘data’ and ‘output’ make it unclear whether research findings, tables and published papers are outputs subject to restrictions in data sharing agreements, which could limit publication and reduce the scheme’s effectiveness. It recommends that the Code direct decision makers treat public funding or ethics approval as evidence that a project serves the public interest; clarify what constitutes an output for research and whether each example of a ‘use’ in clause 13(2) is also an output; and give custodians guidance on reasonable requirements for use of outputs, so that agreements do not restrict communication of findings where the public interest lies in their publication. It also proposes amending clauses 9 and 19 on designated individuals to refer to access to data rather than outputs, consistent with clauses 10 and 20, further guidance on outputs exiting the scheme, and limiting annual reporting to information already held in the register of data sharing agreements.